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Joined: Feb 2005
Posts: 663
netteq Offline OP
"Above & Beyond" Member (300+ posts)
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"Above & Beyond" Member (300+ posts)

Joined: Feb 2005
Posts: 663
I just wanted to share with those who may not know. It has been a real benefit through this journey.

A friend of mine who is a survivor of breast cancer called last week to check on me and my family. She was the 12 or 13th call that night. I found myself telling the same story over and over again which took time and energy, both of which I am short of these days. I was telling her about this and she recommended this website where I could make a webpage for my husband.

The page allows me to make journal entries, which I do every night, and allows family and friends to be updated regularly without the time consuming phone call.

It is the best tool I have found yet and I am eternally grateful to the person/s that made it happen and offer it to us for free.

If you have a lot of people in your circle this will really work for you. Check it out.

http://www.caringbridge.org

Cindy


Caregiver to ex-husband Harry. Dx 12/10/04 SCC stg 3, BOT with 2 nodes left side. No surg/chemo x4 /rad.x37(rad comp. 03/29/05)Cisplatin/5FU(comp. 05/07/05)-T1N2M0-(cancer free 06/14/05)-(12/10/06) 2 yr. Survivor!!!
Joined: Mar 2003
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Patient Advocate (1000+ posts)
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Joined: Mar 2003
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You are right Cindy that is a really good way of communicating especially when that circle of family and friends is large geographicaly and in numbers. I also have a friend being treated for a brain tumor that used Caringbridge to keep us updated.

Thanks for the reminder.


Mark, 21 Year survivor, SCC right tonsil, 3 nodes positive, one with extra-capsular spread. I never asked what stage (would have scared me anyway) Right side tonsillectomy, radical neck dissection right side, maximum radiation to both sides, no chemo, no PEG, age 40 when diagnosed.
Joined: Jan 2005
Posts: 191
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Joined: Jan 2005
Posts: 191
Cindy, I too have found it easier to direct my friends, cheerleaders and supporters to a website that I hardly used before--Live Journal. Although I'm hip enough to know what blogging is, never thought I'd be one.

I make as many journal entries as I need in a day, and I have friends helping me with putting up photos and mastering the use of it.

I also have the ability to cut the journal off from the public and allow only people I want to have access to it.

Since I'm newly diagnosed, I'm just putting things in as I go along. Maybe I'll add key words like oral and cancer, in case someone just like me is looking to read a journal of something they too might be going thru.

Yours is a very good idea. I wanted to just do a massive email to my 'A' list, but then discovered the whole journal thing could be backdated. Between my computerized journal, and my dayplanner, I can keep track of my meds, moods, pains and goofy thoughts. It simplifies so much.

It's been a learning experience too. Sure I had a digital camera, but friends of mine who have done live journals for years have been teaching me how to size things and photobucket things to add some spice to what I'm putting out there.

I'm with you too on the whole phone call thing. Phone calls wear me out as well. There's only a few people I can bear to be on the phone with for longer than five minutes....

When I do get a chance to sleep, I like to take that nap. I'm so glad we got a phone with a message machine on it.

Jen

Joined: Sep 2003
Posts: 1,244
Patient Advocate (1000+ posts)
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Joined: Sep 2003
Posts: 1,244
Hi Jen
Glad to see you here! am keeping tabs on you through your journal, thanks for the insight, laughter, and letting us walk with you on this difficult journey..
Sunshine...love and hugs
Helen


SCC Base of tongue, (TISN0M0) laser surgery, 10/01 and 05/03 no clear margins. Radial free flap graft to tonsil pillar, partial glossectomy, left neck dissection 08/04

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